This blog is my record of my journey with my son who had a rare, and eventually fatal metabolic illness. It is the story of the last year and a half of his life, his death, and after. I have shared this journey this in the hopes that is will not only help me come to terms with the realities, but also that someone along the way may find it helpful, as they face a similar journey.

This is my place to comment on events, blow off steam, encourage myself (and maybe you), share frustrations, show my love, grieve my losses, express my hopes, and if I am lucky, maybe figure out some of this crazy place we call life on earth.

The content might sometimes get a little heavy. As an understatement..


People who are grieving may write sad or difficult things and bring you down. This blog may not be for the faint of stomach or of heart. Read with caution and at your own risk.

If you are new to this blog, I suggest reading it from oldest to newest. It isn't necessary, as what I write is complete in itself. But this blog is sort of the result of the "journey" I'm going on, and I think it sort of "flows" better from oldest to newest.

I do hope that in the end you will find, in spite of all the difficult and heartbreaking things, things that are worth contemplating.

Welcome along!

Thursday, December 24, 2009


Sometimes other people tell me what a great mom I am. Sometimes they really praise me, as if I were a nominee for Mother Of The Year. I sort of feel as if they think because I have a sick and slowly dying child with so many developmental delays, it sort of propells me into some sort of mom sainthood. Or maybe that I must have been a saint in the first place to have been chosen for this role.

In fact, a doctor once told me that it seemed to her that God placed children like Joel with the very best parents to love them and take care of them. It is sort of a nice thought, once you stop feeling ripped off that your reward for good parenting is a sick child! But if you look around, you will see the reality. Sometimes sick children are born to terrible parents. Sometimes amazing parents get healthy children (and good for them).

In any case, it seems that some people look at me (ok, it seems strange even to me so I'm sure if you really know me??!!!) with an almost sort of awe. Like I did some great thing having a sick child and loving him anyway. Don't be too shocked, but save that awe for someone who actually goes out and adopts children with special needs. I can assure you that I would have never willingly gone this route. This role was thrust upon me without my permission. And I really can't help loving Joel.

I know these people who praise me mean well. In fact, I'm pretty sure some of them, who know me better, know they are greatly exagerating my good qualities, but do it because they are trying to encourage me. And bless their hearts for that, because heaven knows I need all the encouragement I can get. I'm not saying I don't appreciate it. In fact, maybe some days if someone could stand by and applaude my getting out of bed, it would be good. :)

All the same, it sometimes makes me a bit uncomfortable. Cause no one knows better than I (except for God) how untrue all that is. It is nice to be praised, but when you really know how undeserved it is, you get a bit worried. When will they discover the award went to a shabby imposter, what will they do?

As all of us mothers know (and maybe the fathers too?) being a parent involves a certain amount of guilt. There are so many things to do wrong, and so many mistakes to make. Sometimes we are well meaning and it is an honest mistake. And sometimes we are just human which means we can be insensitive, selfish, lazy, stubborn, etc. even, or sometimes more, with those we love most.

When it come to Joel, the guilt list has a lot more potential. I feel guily because there are so many things I could, or even should, do for Joel. And sometimes I don't do then. Sometimes I am too tired and overwhelmed, but sometimes I really am just too selfish and lazy. I know you might have a hard time believing it, but let me assure you, 'tis so. I really am not "miracle" mom. I get resentful that things are so hard. Why should I have to be "miracle mom?" I don't feel like doing P/T that day. I take out the stress on Steve or Caeden. And I feel guilty that I don't "spare" more of myself for Caeden, give him more time and attention.

All these things become a heavy weight on me. I can carry these things around and feel pretty crummy about all my personal failings. Truly knowing myself, even I sometimes have a hard time liking me!

Fortunately, I know the best "weight loss program." Sometimes when it all just gets too much, the guilt and stress of trying to be a "perfect" mom to my little boy, the pressure I feel to seem together in front of medical people, the worry of what other people would feel about me if they really knew how much I fail my children.... It all gets too much. Then I take a deep breath and feel this incredible lightening of my load, and a great peace, as I speak a word to my God and feel Him there telling me that He loves me JUST THE WAY I AM.

I can't explain how wonderful it really is to know God is in my corner and rooting for me despite all my failings. I mean, He REALLY knows how bad I get and He still accepts me. Of course, my good friends have an inkling, though I try and keep my "bad behavior" to a minimum with them, lest I drive them away! Steve has the best idea of who I really am as he has been the brunt of many bad moods and selfishness. But even he doesn't know all of the "dark places" that lurk inside me.

If you are the sort of person who can be honest with yourself, you know what I mean. The truly dark places. We justify all sorts of behavior on the outside, but when we really look deep down, we can find a lot of crap there, hidden just out of view. Well, I can anyway. And I really don't want to "prove" this to you. I could drag out the pale, wriggling, disgusting creatures to the light of day to show you, but I will spare you that horrifying experience because I couldn't bear to see the look of revulsion on your face if you really knew what sort of betrayals, selfishness, dishonesty, etc. that I can really be capable of.

What I love about God, is that I don't have to worry about that. There was that terrible moment long ago where I had to face who I really was in front of God, face it, acknowledge it, and "set things straight" with Him. I still let Him know when I mess up, I'm sorry. But after a long, hard day of feeling my inadequacy, my failings, my insecurities about how I am performing, I get to God, and it is like sitting in a great, big comfy chair, or taking a long, hot shower. Thank God He loves me and accepts me, warts and all. And because He loves me that way, I can accept myself too, and feel worthwhile again.

That is the greatest gift a friend can give. Not that they think the world of you, but that they know how messed up and imperfect you are, and they still stick around. And for all my friends who love me in spite of myself, I say a great big thank you! Thank you!

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